Covid 19 and Nursing Homes

Recently, two good friends of mine with physical limitations who had been waiting for over a year to enter a carefully chosen assisted living/long term healthcare facility changed their minds about going. They found out that the facility had at least one resident with Covid 19. They are now staying at home with help from their sons, friends and a paid caregiver.

And my 97 year old friend Melissa with heart and mobility problems is adamant about staying at home to be cared for, primarily by her wonderful family. Recently, she developed a disturbing symptom but instead of going to her doctor as usual, her doctor was able to come to her via a telehealth visit by computer. Melissa is happy at home and knows that other options like home hospice are available if necessary.

Are these three people overreacting about nursing homes?

In my opinion, the answer is probably no at this time.

Unfortunately, long-term health facilities for the elderly have become hotbeds for Covid 19 despite those residents being the most at risk during the pandemic. A number of  staff at those facilities have also caught Covid 19 and some have also died.

Even worse, as NBC News reported April 25, 2020:

“Three states hit hard by the pandemic — New York, New Jersey and California — have ordered nursing homes and other long-term care facilities to accept coronavirus patients discharged from hospitals.” (Emphasis added)

On May 6, 2020, the Wall Street Journal reported that New York nursing homes may have nearly 5,000 Covid-19 related deaths and the next day, the California Mercury News  reported that  “at least 41 percent of all known coronavirus deaths in California have occurred among residents and staff of nursing homes and assisted living facilities.” (Emphasis added)

And, unfortunately, these same people are usually dying alone due to restrictions for even family members in hospitals and nursing homes. Sadly, even funerals are changing with new restrictions for ceremonies and mourners.

According to an April 21, 2020 article “Nursing Homes Balk at COVID Patient Transfers From Hospitals” by the American Association for Retired Persons (AARP):

“The American Health Care Association says discharged hospital patients should return only to nursing homes with separate COVID-19 units. Ideally, those units are staffed with employees with access to personal protective equipment. The federal Centers for Medicare & Medicaid Services (CMS), which regulates nursing homes, endorsed the idea of separate COVID units this month.” (Emphasis added)

CONCLUSION

I was personally shocked to discover that  only  23 states publicly reported data for cases and deaths due to COVID-19 in long-term care facilities  as of April 23, 2020.

However, the Trump administration has recently announced upcoming new regulatory requirements that:

“will require nursing homes to inform residents, their families and representatives of COVID-19 cases in their facilities. In addition, as part of President Trump’s Opening Up America, CMS will now require nursing homes to report cases of COVID-19 directly to the Centers for Disease Control and Prevention (CDC).” (Emphasis added)

When my mother with Alzheimer’s disease was dying from cancer in 1988, there was no pandemic and we cared for her at home as long as possible before placing her in a nursing home nearby for safety reasons. So I do know that nursing homes and other long-term care facilities can be wonderful and even necessary options.

But until this pandemic dissipates, we need all the essential information  necessary to protect and advocate for the most vulnerable among us.

CPR (Cardiopulmonary Resuscitation) in the age of Covid 19-What You Need to Know

Several years ago, a nurse friend was with her boyfriend at a concert hall when he collapsed with no heartbeat or breathing. She called for 911, started CPR and asked for an AED (automatic external defibrillator) , which is located in most offices and public buildings. An AED is a sophisticated, yet easy-to-use (even for a lay person with training), medical device that can analyze the heart’s rhythm and, if necessary, deliver an electrical shock, or defibrillation, to help the heart re-establish an effective rhythm.

However, the concert staff didn’t know where it’s AED was.

My friend continued to deliver mouth to mouth an chest compressions while a crowd gathered, some of whom were physicians who told her to stop because it was hopeless.

Finally, an ambulance arrived and took the boyfriend to a local hospital. He not only survived but was discharged 3 days later in good condition and determined to start a healthier lifestyle.

So I was stunned to read an April 21, 202 New York Post article “NY issues do-not-resuscitate guideline for cardiac patients amid coronavirus” (Covid 19) that said New York state had just issued “a drastic new guideline urging emergency services workers not to bother trying to revive anyone without a pulse when they get to a scene, amid an overload of coronavirus patients.” (Emphasis added)

While paramedics were previously told to spend up to 20 minutes trying to resuscitate a person in cardiac arrest, the new guideline was deemed “necessary during the COVID-19 response to protect the health and safety of EMS providers by limiting their exposure, conserve resources, and ensure optimal use of equipment to save the greatest number of lives.’’

First responders were outraged and their union leader said “Our job is to bring patients back to life. This guideline takes that away from us.”

Earlier this month, the Regional Emergency Services Council of New York had issued a new guideline that said cardiac arrest patients whose hearts can’t be restarted at the scene should no longer be taken to the hospital for further life-saving attempts because the city hospitals had been “inundated with dying coronavirus patients to the point where there are frequently no ICU beds.”

One paramedic acknowledged that only a small percentage of people in cardiac arrest-3 or 4 out of 100-are brought back to life through  CPR and other aggressive interventions such as drugs and hospitalization but insisted that “for those three or four people, it’s a big deal.”

On April 22 and just hours after the initial New York Post article was published, the new guidelines were rescinded. New York City’s Fire Department and first responders never adopted the no-revival directive from the state and kept using the traditional 20-minute policy.

WOULD YOU KNOW WHAT TO DO IF SOMEONE COLLAPSES WITH NO HEARTBEAT OR BREATHING?

When I started as a nurse in many decades ago, we were trained in CPR and taught how to use AMBU bags (mask, valve and self-inflating bag) to breathe for patients in arrest or distress in place of mouth to mouth resuscitation. AMBU bags are now standard equipment on ambulances and other rescue services.

Over the years, techniques for CPR changed especially in 2008 when the American Heart Association released new recommendations that bystanders can skip mouth to mouth resuscitation and use “Hands-Only CPR” to help an adult who suddenly collapses:

“In Hands-Only CPR, bystanders dial 9-1-1 and provide high-quality chest compressions by pushing hard and fast in the center of the victim’s chest.”

Now, the Covid 19 pandemic has changed CPR guidelines.

As the April 16, 2020 Notre Dame Fire Department concisely explains on pandemic-modified CPR guidelines for bystanders:

“Bystander CPR (cardiopulmonary resuscitation) improves the likelihood of an individual’s survival from cardiac arrest occurring outside of the hospital. However, coronavirus is spread through respiratory droplets when an infected person coughs, sneezes or talks. If a rescuer breathes into a cardiac arrest individual’s mouth, there will likely be an exchange of respiratory droplets. Household members who have been exposed to the individual at home should not hesitate to attempt life-saving rescue measures.

A non-household bystander who attempts to rescue a cardiac arrest individual should wear a face mask or cloth over his/her mouth and nose and place a face mask or cloth over the mouth and nose of the individual to reduce the risk of transmission.

In the case of an adult in cardiac arrest, lay rescuers should perform at least hands-only CPR. For children, lay rescuers should perform chest compressions and consider mouth-to-mouth ventilation, if willing and able, given the higher incidence of respiratory arrest in children.

To perform Hands-Only CPR, you place your hands in the center of the chest and pump hard and fast at a rate of 100 to 120 compressions per minute.

If an AED (automated external defibrillator) is available, please proceed with opening the AED and following the automated prompts to initiate life-saving intervention. Defibrillation is not expected to be a highly aerosolizing procedure. If an AED is not available, please proceed with Hands-Only CPR.

For all cardiac related emergencies, EMS (911) should be called…For more information, refer to the American Heart Association’s interim CPR guidance.

CONCLUSION

As a nurse, I have participated in many instances of cardiac or respiratory arrest and it’s always stressful. However, the joy of participating in saving someone’s life is indescribable. And even when we were unsuccessful, we had the consolation of knowing that we did everything we could for that person.

I encourage everyone to take a course to learn CPR. To find such a course, you can contact your local hospital or go to the American Heart Association’s Find A Course  or to the Red Cross website.

And I personally thank the courageous New York Fire Department and first responders for upholding the standards of care for all their patients.

 

Health Care Rationing, Covid 19 and the Medical Ethics Response

While the key medical model in the US for Covid 19 deaths has just again been revised from 240,000 to 100,000 to now just 60,000 by August along with concerns about the possible overuse of ventilators in Covid 19, there is still a push for medical health care rationing guidelines.

As the April 8, 2020 Wall Street Journal article As Coronavirus Peaks, New York City’s Hospitals Prepare ‘Live or Die’ Guidance” notes, some hospitals and health care systems are coming up with guidelines and scoring systems to allocate ventilators. At the same time, New York lawmakers have recently passed a measure to protect hospitals and clinicians from certain medical malpractice lawsuits while the Covid 19 virus strains the health system.

Disability groups are complaining about discrimination in health care rationing plans that would “illegally deprive people based on age, mental cognition or disability”. In addition, a recent Center for Public Integrity analysis shows that policies in 25 states would ration care in ways disability advocates have denounced.

While such rationing plans are usually said to be based on determining which patients have little if any chance of a good outcome, i.e.  medical futility, even the American Medical Association has admitted in its Code of Ethics that “However, physicians must remember that it is not possible to offer a single, universal definition of futility. The meaning of the term “futile” depends on the values and goals of a particular patient in specific clinical circumstances.” (Emphasis added)

THE CATHOLIC MEDICAL ETHICS PERSPECTIVE

Medical ethics in Catholic health care institutions are often considered the most stringent in terms of protecting human life from conception to natural death. So what do Catholic ethics authorities say about rationing?

On April 3, 2020, the US Catholic Conference of Bishops (USCCB) issued a powerful statement “Bishop Chairmen Issue Statement on Rationing Protocols by Health Care Professionals in Response to Covid-19” that stated:

“Every crisis produces fear, and the COVID-19 pandemic is no exception. However, this is not a time to sideline our ethical and moral principles. It is a time to uphold them ever more strongly, for they will critically assist us in steering through these trying times.”

and

“Good and just stewardship of resources cannot include ignoring those on the periphery of society, but must serve the common good of all, without categorically excluding people based on ability, financial resources, age, immigration status, or race.” (Emphasis added)

The statement cited other Catholic health care groups like Catholic Medical Association, the National Association of Catholic Nurses and the National Catholic Bioethics Center that all issued helpful statements.

However another Catholic group mentioned, the Catholic Health Association, has also issued a problematic statement on the rationing issue titled “Code Status and COVID-19 Patients “ stating that:

“CPR may be medically inappropriate in a significant portion of elderly, critically ill patients with COVID-19 and underlying comorbidities. As per Parts 3 and 5 of the Ethical and Religious Directives for Catholic Health Care Services, if it is shown that the burdens exceed the benefits, it is morally acceptable to withhold such procedure.” (Emphasis added)

And even worse:

“If treating clinicians, including more than one physician, determine that CPR is not medically appropriate, a Do Not Attempt Resuscitation Order (DNR) may be written without explicit patient or family consent.” (All emphasis added)

In a separate April 7, 2020 statement from the  National Catholic Partnership on Disability titled “Rights of Persons with Disabilities to Medical Treatment During the COVID-19 Pandemic , the NCPD states “As The Office of Civil Rights of the U.S. Department of Health and Human Services has recently reminded us, America’s basic civil rights laws, including the Americans with Disabilities Act, prohibit discrimination:

“[P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities. ”  (Emphasis added)

CONCLUSION

Over my many decades as a nurse, I have seen the question of “quality of life” deteriorate from what can we do to improve the quality of life for every patient to judging whether or not a patient has sufficient quality of life to justify treatment or care like a feeding tube.

During that time, Alzheimer’s and major CVAs (strokes) in advanced age have come to be seen as fates worse than death that should not be a burden on people and their families or a waste of health care resources.

Before my own mother developed Alzheimer’s and a terminal cancer, she often told me that she never wanted to be a “burden to her family”. I never considered her a “burden” when I cared for her and she was comfortable and fed to her last day. I will never tell my children what my mother told me.

And especially with assisted suicide polls showing much public support, we cannot afford to play into the idea that some people are “better off dead” regardless of whether or not they “choose” a premature death or someone else “chooses” it for them.

We should also remember the lethal legacy of the 2005 Hurricane Katrina disaster. Flooding caused the New Orleans mayor to issue an unprecedented mandatory evacuation of the city with the exception of major hospitals. But when conditions worsened at the large Memorial Medical Center and evacuation efforts were slow, some medical staff allegedly euthanized some of the patients.

However and despite strong evidence, a massive PR campaign portraying those patient deaths as “compassionate” resulted in the 2007 grand jury refusing to indict the doctor and 2 nurses charged.

As we see this debate over medical ethics in crisis situations continue today, we must continue to insist that every person deserves a natural lifespan without discrimination.

Is Abortion More Important than Safety? The Case Now Before the US Supreme Court

In 1986, Missouri became the first state to pass an abortion law requiring abortion doctors to have admitting privileges at a hospital “in the community” to ensure the health and safety of women undergoing abortion.

Later, I was horrified to find out that a doctor was doing abortions just a few miles from my home in St. Louis. It turned out that his admitting privileges were in another country! The abortion clinic was closed.

As I wrote last August in “Pro-abortion Desperation in Missouri” :

“the last abortion clinic in Missouri lost its license because of numerous health and safety violations. The Planned Parenthood abortion clinic continues to operate only because of several temporary injunctions by a judge.”

While the Missouri case is still ongoing, now the US Supreme Court is hearing arguments in the June Medical Services v. Russo case concerning whether Louisiana’s law requiring abortion providers to have admitting privileges at a local hospital conflicts with the Court’s 2016 Whole Woman’s Health v. Hellerstedt decision along with a second issue about “whether abortion providers can legally represent the interests of women seeking an abortion when those providers sue to overthrow laws protecting those women’s health and safety.”

IS ABORTION MORE IMPORTANT THAN SAFETY?

In a powerful commentary titled “The OB-GYNs Who Play Politics With Women’s Lives-Abortion is more important than safety to the American College of Obstetricians and Gynecologists” in the March 3, 2020 Wall Street Journal, Dr. Christina Francis calls out the American College of Obstetricians and Gynecologists (ACOG) for “offering a medically unsound recommendation in the furtherance of its extreme position on abortion”.

Dr. Francis, a board-certified obstetrician-gynecologist and the chairman of the board of the American Association of Prolife OB/GYNS, refutes ACOG’s friend of the court brief arguing that the admitting privileges requirement for abortionists is not “‘medically justified’ and therefore constitutes an ‘undue burden’ on a woman’s right to abortion'” by stating:

“Yet every second counts in an obstetric emergency. A pregnant woman experiencing severe uterine hemorrhage can bleed to death in as little as 10 minutes. That’s why its essential that anyone performing an abortion have the ability to admit a patient to a nearby hospital—preferably one closer than 30 miles away.”

ACOG routinely puts politics ahead of medicine by adopting the most extreme positions on abortion. It has lobbied and briefed against parental notification of minors and informed-consent laws, and in favor of taxpayer-funded abortion. It has advocated for laws restricting speech around clinics and compelling pro-life pregnancy centers to tell women where they can go to obtain state-subsidized abortions. ACOG’s work has gotten so political that in 2008 it added a lobbying arm. I was refused when I asked if I could direct our dues only to the organization’s nonlobbying arm.

Eighty-six percent of OB-GYNs don’t perform abortions, but ACOG’s position is that you either support the most extreme abortion lobbying or you’re off the island. Most of ACOG’s abortion advocacy is undertaken free of consultation with its almost 60,000 members. Physicians who’ve left the organization, like me, support its general work but don’t want to support abortion lobbying, especially when it comes to watering down or eliminating safety standards. (Emphasis added)

Dr. Ford also notes that:

“In any practice area other than abortion, a doctor performing an operation would have hospital-admitting privileges. In the case of complications that doctor would, at a minimum, call ahead to fast-track the patient to the appropriate emergency care. Abortion-clinic patients, on the other hand, are frequently kicked to the curb and told to make their own way to the emergency room.”

CONCLUSION

Those of us in Missouri have seen the problems and attempted coverups at the hopefully last Planned Parenthood clinic in St. Louis.  Just last year, it was reported that:

“Operation Rescue, with the help of Missouri pro-life activists, has documented 74 medical emergencies that have occurred at RHS Planned Parenthood in the past ten years, including three emergencies that required ambulance transport for women to a local hospital within a 22-day period ending on May 15, 2019.” (Emphasis added) 

The Supreme Court decision is not expected until June and is likely to have an enormous impact on the state of abortion in our country, especially since pro-abortion groups have now abandoned the old rhetoric about keeping abortion “safe, legal and rare'” in favor of tax-payer funded abortion on demand up to birth and even leaving babies to die after failed abortions.

In the meantime, considering choosing and supporting pro-life health care professionals and their professional organizations such as the American Association of Pro-life Obstetricians and Gynecologists (AAPLOG) and the National Association of Pro-life Nurses (NAPN).

Can a POLST be Hazardous to Your Life?

First, we had the “living wills” developed in the 1970s by the Euthanasia Society US (later renamed the Society for the Right to Die) to allow people to states their wishes for or-most importantly-against certain medical treatments in case they become unable to communicate their decisions. By 1991, The Patient Self-Determination Act was passed and every health care facility was required to ask every patient if they had such a document.

Today, we have many types of such documents including the newest one called the “Physician Orders for Life-Sustaining Treatment” (POLST)  that was developed in Oregon (the first state to legalize physician-assisted suicide) in 1991.

A POLST is a short document that people can carry with them with checkoffs for CPR (cardiopulmonary resuscitation) and tube feedings. And if the person is still alive but unable to communicate, the POLST has checkoffs for whether the person wants “Comfort measures only”, “Limited Interventions” like antibiotics and IV fluids, or “Full treatment”.

Although efforts to pass a national POLST law have failed so far, many states have passed their own versions that lead to serious concerns.

Most recently, Illinois is now considering a POLST bill SB 3524 that amends and expands the previous Health Care Surrogate Act.

Among the changes in the Illinois bill are changing “qualified physician” to “qualified health care practitioner” which  “means an individual who has personally examined the patient and who is an Illinois licensed physician, advanced practice registered nurse, physician assistant, or licensed resident after completion of one year in a qualified graduate medical education program”. (Emphasis added)

The bill also removes the requirement of a witness to the signature of the person, legal guardian or health care surrogate on the POLST form. This is an important requirement to be reasonably certain that the POLST reflects the person’s wishes.

The bill  defines a person’s “qualifying conditions” for a POLST as “Terminal condition”, “Permanent unconsciousness”, or “Incurable or irreversible condition” (a definition that alarms many disability groups).

The bill also defines “Life-sustaining treatment” as “any medical treatment, procedure, or intervention that, in the judgment of the attending physician, when applied to a patient with a qualifying condition, would not be effective to remove the qualifying condition or would serve only to prolong the dying process“. (Emphasis added)

Also, the bill states that the health care provider acting on the POLST in “good faith” is not “subject to any criminal or civil liability, except for willful and wanton misconduct, and may not be found to have committed an act of unprofessional conduct.” (Emphasis added)

A February 16, 2020 editorial in the Journal of the American Medical Association titled “Physician Orders for Life-Sustaining Treatment and Limiting Overtreatment at the End of Life” had this chilling observation about physicians’ attitudes and POLSTs:

Even with the best of counseling, some patients will refuse any limitations of treatment—36% of the patients in the study by Lee et al1 had POLSTs that indicated “full treatment,” presumably including admission to the ICU, mechanical ventilation, and cardiopulmonary resuscitation, if necessary. While receipt of these therapies would be considered POLST-concordant care, clinicians sometimes object to providing care that they perceive will be unbeneficial or even harmful. These conflicts between clinicians and patients or their surrogates are a common problem in ICU care and are seen as a major contributor to distress and frustration among clinicians.” (Emphasis added)

CONCLUSION

A 2013 article “The Problem with POLST – Physician Orders for Life-Sustaining Treatment” succinctly describes the problems with POLST and what we should instead be striving for:

“POLST only makes sense in cases of patients with terminal illnesses, in end stage disease with no real options. By that point in time there are no therapeutic treatment decisions to be made. Yet, a patient who is under treatment who is living with a disease, there are alternative treatment decisions to be made. There are risks to weigh and an up to date informed consent required. It cannot be left up to a patient to research new literature and evidenced based medical standards.

POLST even precludes an assessment by a paramedic to make any decisions on overall survivability at the time of emergency care in the field. Surrogate decision makers are not consulted, advance health directives are not read or considered, and second opinions are not sought. Intelligent and experienced assessments are precluded by POLST. In cases of non-terminal patients POLST does not respect society’s moral mandate to respect life and instead treats life cavalierly by simply pinning a card on a person’s chest with life and death decisions of timely and clear origin.” (Emphasis added)

As a former hospice, oncology and ICU nurse, I wholeheartedly agree!

Roe v Wade 47 Years Later

Like everyone else I knew, no one expected the US Supreme Court’s case Roe v Wade to legalize abortion in 1973. I was shocked when the Court legalized abortion with virtually no restrictions during the first trimester stating:

“(a) For the stage prior to approximately the end of the first trimester, the abortion decision and its effectuation must be left to the medical judgment of the pregnant woman’s attending physician. Pp. 163, 164.
(b) For the stage subsequent to approximately the end of the first trimester, the State, in promoting its interest in the health of the mother, may, if it chooses, regulate the abortion procedure in ways that are reasonably related to maternal health. Pp. 163, 164.” (Emphasis added)

It wasn’t until much later that I learned about the Doe v Bolton case (decided at the same time as Roe) that expanded the definition of “health”, stating that the “medical judgment (for abortion) may be exercised in the light of all factors–physical, emotional, psychological, familial, and the woman’s age–relevant to the well-being of the patient. All these factors may relate to health.” (Emphasis added)

That redefinition of a woman’s health opened the expansion of abortion.

Unfortunately, those of us who expressed horror about these decisions were quickly derided by those who supported legalized abortion. Even those of us who were medical professionals and knew better felt intimidated.

MY PERSONAL EXPERIENCE WITH ABORTION AND ITS EFFECTS

When I became a mother a few years after the Roe v Wade decision and read the prenatal development pamphlet given to expectant mothers, my heart ached for those mothers who chose abortion without such crucial information.

Eventually, I had a daughter born with Down Syndrome and a severe heart defect as well as another daughter who became pregnant at 18. I could understand the fear and desperation underlying an abortion decision and I was determined to help in some way by joining the pro-life movement.

Because of the pro-life movement, I have been better able to help desperate mothers, children with disabilities and their families as well as other people in danger of being seen as “inconvenient”, “unwanted” or “better off dead”.

THE ABORTION TRAJECTORY AND HOW IT IS CHANGING

After the Roe decision, it didn’t take long before “abortion rights” to begin expanding and now we have at least 8 states legislating abortion on demand throughout pregnancy  as well as at least 19 states allowing abortionists to leave babies to die who survive abortion.

Most recently, pro-abortion Democrats have blocked efforts to get Congress to vote on the “Born-Alive Abortion Survivors Protection Act” and in my home state of Missouri, the last Planned Parenthood clinic is still fighting closure over its health violations.

But despite all this activity on the pro-abortion side, many states have enacted strong protections for mothers and their unborn babies. Even the pro-abortion Guttmacher Institute acknowledges that:

“In 2019, conservative state legislators raced to enact an unprecedented wave of bans on all, most or some abortions, and by the end of the year, 25 new abortion bans had been signed into law”

And an encouraging new Marist/Knights of Columbus poll  shows that a majority of Americans (65%) would vote for candidates who back abortion restrictions and nearly two-thirds of Americans oppose abortion if the child will be born with Down Syndrome.

In addition, there are more pregnancy help centers than abortion clinics to help women and their unborn babies.

CONCLUSION

As abortions are decreasing and the abortion movement is exposed for its radical goals, it appears that more and more people are seeing the truth about abortion and the pro-life movement. Personally, I have never felt more encouraged since the Roe v Wade decision 47 years ago and especially by the inspiring words of President Donald Trump, the first sitting president to address the annual March For Life in Washington, D.C.:

“We cannot know what our citizens yet unborn will achieve. The dreams they will imagine. The masterpieces they will create. The discoveries they will make. But we know this: every life brings love into this world. Every child brings joy to a family. Every person is worth protecting….

Together, we will defend this truth all across our magnificent land. We will set free the dreams of our people. And with determined hope, we look forward to all of the blessings that will come from the beauty, talent, purpose, nobility, and grace of every American child.”

Lethal Problems with Medical Futility and Disability Bias

In 2018,  Chris Dunn survived a freak diving accident that left him paralyzed, mostly blind and on a ventilator to breathe.  He spent most of the next year in an ICU in rural Maine.

Unable to see, eat, breathe or move on his own, the 44 year old father and concrete work spent his days in bed listening to the History Channel and hoping for a chance to show he could do more.

Efforts to find a rehab center failed. Even worse, hospital administrators and others were encouraging Chris’s mother Carol to put him in hospice to die.  As the article states:

“Drugged up and confined to bed, Chris waited while dealing with a hospital staff that didn’t know what to do with him. ‘There would be nurses that would come in and tell me, ‘You know you’re making your son suffer,’ says Carol. ‘I mean, what’s a mother to do with that?’”  (Emphasis added)

However, Carol refused to give up trying to find help for Chris and after 7 months, finally contacted the United Spinal Association. Jane Wierbicky, a longtime nurse and a member of the Association’s Resource Center team worked to help find a rehab center in Atlanta.

Now Chris only uses the ventilator a few hours a night, got outdoors to catch a fish, and returned home to spend Thanksgiving with his mother and girlfriend.

With the help of his mother and a team of advocates, Chris hopes to eventually live in an accessible apartment.

Medical care for Chris was not futile.

MEDICAL FUTILITY

The National Council on Disability defines “medical futility” as

“an ethically, medically, and legally divisive concept concerning whether and when a healthcare provider has the authority to refuse to provide medical care that they deem ‘futile’ or ‘nonbeneficial’. A “medical futility decision” is a decision to withhold or withdraw medical care deemed “futile” or “nonbeneficial.” (Emphasis added)

Because of my professional and personal experiences with disability bias as well as my volunteer work with people with disabilities, I have seen firsthand the potentially lethal effects of medical futility decisions based on disability. I have been writing on this topic for years, most recently on Missouri’s Simon’s Law enacted after the parents of a baby with Trisomy 18 and a heart defect who died later found out that doctors had ordered a “Do Not Resuscitate” and withheld life-sustaining treatment without their knowledge due to a secret medical futility policy at the Catholic hospital treating their son.

Recently, I found out that the National Council on Disability just published a 82 page comprehensive report titled “Medical Futility and Disability “  as part of a five-report series on the intersection of disability and bioethics.

In a letter to President Trump, the Council chairman states that the series:

“focuses on how the historical and continued devaluation of the lives of people with disabilities by the medical community, legislators, researchers, and even health economists, perpetuates unequal access to medical care, including life-saving care.

and notes that:

“In recent years, there has been a push to regulate medical futility decisions on the state and institutional levels. State laws, which vary greatly in their content and approach, define the protections, or lack thereof, of a patient’s wishes to receive life-sustaining treatment. Hospitals have turned to process based approaches, utilizing internal ethics committees to arbitrate medical futility disputes. Despite the increased attention, however, disability bias still finds its way into futility decision making.” (All emphasis added)

The Council identifies four factors that are influencing the futility debate today: “Advanced life-saving medical technology, Changes in healthcare reimbursement, Evolving concepts of patient autonomy and the Rise of the right-to-die movement”.

The report also extensively explores the legal issues  and several court decisions involving medical futility like the Terri Schiavo and Haleigh Poutre cases.

STATE LAWS

The Council report also evaluated current state laws regarding medical futility decisions and found only 11 with strong patient protections, 19 without patient protections, 19 with weak patient protections, and 2 with time-limited patient protections.

Further complicating the state laws is the lack of transparency for patients or other family members regarding an institution’s medical futility policies. Hospitals are rarely transparent with their medical futility policies, as in the Simon’s Law case. The report is right when it states that “the disclosure of medical futility policies is essential to providing patients, their surrogates, and their families with the information they need to protect their rights and ensure accountability”.

The Council also notes that “Disability nondiscrimination laws, including the ADA and Section 504 of the Rehabilitation Act, provide a viable, yet largely unexplored vehicle for enforcing the rights of people with disabilities in the medical futility context.”

The report ends with recommendations for Congress, the executive branch, medical and health professional schools, professional accreditation bodies, healthcare insurers and state legislatures to combat the problem of disability bias in healthcare.

CONCLUSION

One of the reasons I chose to become a nurse decades ago was the strong ethical principles in medicine. We were educated to treat all patients to the best of our ability regardless of race, disability, socioeconomic status, etc.  “Quality of life” was something to improve, not judge. The traditional hospice philosophy was to neither hasten nor prolong dying.

But over time, I saw ethics change. As the report itself notes, the advances in technology, changes in health care reimbursement, evolving concepts of patient autonomy and the rise of the right-to-die movement led to radical changes in both law and medical ethics.

The concept of medical futility was no longer limited to medically certain circumstances of treatment ineffectiveness but, all too often, also to the patient’s (and sometimes the family’s) perceived “quality of life”.

Such disability bias is often unrecognized, even by the medical professionals caring for the person, but it is a real bias that must be eliminated in our society.

I admire people like Chris Dunn and his determined mother who show us the possibilities when people with even severe disabilities get a chance to have the best life possible.

 

 

 

 

 

 

 

 

Down Syndrome, the Gift of Innocence, and Abortion

In a beautiful op-ed in the December 23, 2019 Wall Street Journal titled “Down Syndrome and the Gift of Innocence” , William McGurn writes about a small group of contemplative nuns called the Little Sisters Disciples of the Lamb who reside in France.

The order was founded in 1985 by Mother Line, now prioress, and Sister Véronique, who felt a vocation but could not find an order to accept her because she has Down syndrome. Now there are 10 sisters (eight with Down syndrome) who exist so that “those who are in last place in the world”—women with Down syndrome—can “hold in the church the exceptional role of spouses of Christ. In practice this means that able-bodied sisters devote their lives to ensuring their fellow sisters with Down syndrome can live their vocations.”:

“The smiling faces of our little sisters with Down syndrome are a great message of hope for many injured families,” Mother Line tells me. “Our smallness will also say that we are made for very great things: to love and to be loved.”

And while the rest of the world dismisses innocence as naïve or childish, Mr. McGurn writes that:

“the nuns choose to cherish and exalt innocence—and the unconditional love and trust that comes with it—as an example of how we are meant to live with one another.”

DOWN SYNDROME AND ABORTION

In contrast to these wonderful nuns, a federal judge recently reversed his own ruling on a hard-fought pro-life abortion law passed in my home state of Missouri by blocking a provision that prohibits discriminatory abortions on unborn babies with Down syndrome.

Missouri was set to join several other states that passed such laws until U.S. District Judge Howard Sachs reversed his decision.

It is hoped that this decision will be appealed. As Justice Clarence Thomas has previously written about such laws that protect unborn babies from eugenic discrimination:

“… this law and other laws like it promote a State’s compelling interest in preventing abortion from becoming a tool of modern-day eugenics.”

and

“Although the Court declines to wade into these issues today, we cannot avoid them forever. Having created the constitutional right to an abortion, this Court is dutybound to address its scope.” (All emphasis added)

AN “ACCEPTABLE” PREJUDICE?

A few days ago, the head of the American Civil Liberties Union (ACLU)  Disability Rights Project Susan Mizner defended abortion for unborn babies with Down Syndrome writing that:

“There is no question that stigma, prejudice, and misconceptions about people with disabilities are widespread. But forcing someone to carry a pregnancy to term against their will does nothing to tackle underlying and systemic ableism and discrimination against people with disabilities.

“On the contrary, forced pregnancy threatens a person’s physical, mental, and emotional health, as well as the stability and wellbeing of their family, including existing children.” (All emphasis added)

As an RN and mother who had to fight medical discrimination against my daughter Karen who had both Down Syndrome and a heart defect as well as a past board member of the St. Louis Down Syndrome Association, I take great exception to this dangerously inaccurate statement. We can never eliminate prejudice by eliminating people with disabilities before or after birth.

CONCLUSION

I applaud the Little Sisters Disciples of the Lamb in France who cherish their sisters with Down Syndrome who have so much to give to the world and I am horrified by the several states that have now passed laws that allow abortion for any reason at any time during pregnancy or even after birth.

Although unborn babies with Down Syndrome are especially at risk, we must remember that ALL children enter the world with the “gift of innocence” and none deserve to be killed before birth.

 

Can Getting a DNR Tattoo be Hazardous to Your Health?

Cardiopulmonary resuscitation (CPR) is a lifesaving technique developed in the 1960s  for emergencies such as a heart attack or near drowning when a person’s breathing or heartbeat has stopped. Even non-medical people can be trained in basic CPR. However, not every person can be saved with CPR and some who do survive can have some brain damage.

In the early 1970s when I was a young ICU nurse, patients who appeared to be dying or their families could agree to a “do not resuscitate” (DNR) order.

But the 1991 Patient Self-Determination Act, along with the so-called “right to die” cases like Nancy Cruzan and Karen Quinlan, resulted in  the widespread use of DNR orders in hospitals.

So now after years of concern with rising health care costs, older people worried about becoming a “burden” to their adult children, and the push for people to sign “living wills” to refuse certain treatments if they become incapacitated,  it should not be a surprise that a growing number of people-including young, healthy people-are getting DNR (do not resuscitate) tattoos.

But what does that mean when an unconscious person is rushed to an emergency room?

Recently, there was a serious discussion of an actual case and a poll on ethics and DNR tattoos in MedPage, a newsletter for health care professionals.

The case involved a patient who arrived in an emergency room and unconscious after suffering a heart attack while jet skiing on vacation. He had ‘Do Not Resuscitate’ tattoo on his chest. There was a signature under the tattoo. However, the ambulance crew called restarted his heart with a defibrillator. The man was stabilized but hours later he has another heart attack.

The poll question and results from the 1580 votes were:

“Do you comply with the DNR tattoo or not?

Yes: 43.04%

No: 56.96%”

I was appalled that 43% would treat a DNR tattoo as the equivalent of a legal document and I agree with the reasoning of the lawyer/doctor reviewing this case who wrote that “the legally correct course of action would be to temporarily ignore the tattoo unless and until evidence that the tattoo reflects the patient’s current thinking is brought forth.”

PROBLEMS WITH DNR ORDERS

Unfortunately in hospital situations, DNR orders are sometimes misinterpreted as not wanting to live  or “do not treat” when the person had assumed it would apply only in extreme circumstances.

For example, a new nurse was taking care of a young girl with mental retardation who was eating when she suddenly started choking. The new nurse ran to her head nurse in a panic and was told that, because the parents agreed to a DNR order, the nurses could only just hold her hand!

Obviously, relieving the choking by removing the food should have been done.

CONCLUSION

The results of not understanding  DNR orders can be tragic but too many people-including medical professionals-don’t realize the legal and ethical ramifications.

Personally, I chose to make a durable power of attorney for health care naming my husband as the decision maker if I could not speak for myself rather than a “living will” or other advance directive with various treatments to check off if I can’t speak for myself.

I want all the options, risks and benefits of treatments fully explained to my decision maker based on my current condition so that he make an informed decision. This would include the use of a DNR if or when I am dying.

What we all desperately need now is more awareness and common sense when it comes to asking for or allowing a “Do Not Resuscitate” order, especially a DNR tattoo.

 

Exposing Abortion: “The Silent Scream” and “Unplanned”

In 1985, I was asked to show the new film “The Silent Scream” (still online) at a local community college for the students. I was anxious to show this amazing 30 minute film showing an actual abortion on ultrasound and narrated by the late Dr. Bernard Nathanson, a former abortionist who was the co-founder of the National Association for the Repeal of Abortion Laws (NARAL) in 1969.

Dr. Nathanson later deeply regretted his actions, and earned the enmity of the abortion movement by exposing the “deceptions, dirty tricks, and other tactics that helped make abortion legal and socially acceptable in the United States”.

His “The Silent Scream” film was his effort to get the truth about abortion to the nation and it caused a lot of controversy.

When I showed the film at the community college, I was seven months pregnant and had a bumper sticker that said “Every child deserves a birthday”. My mother supported my pro-life work but was worried about my speaking publicly. “Someone may try to shoot you!” she warned.

I just laughed at the time but when I got to the college I saw an armed guard also attending. He said he was there because there were death threats about showing this film. Although nothing happened and the students were very receptive to the film’s message, I was a bit shaken but hopeful that this film would help end the abortion nightmare.

34 years later, the battle to end abortion continues.

I thought of Dr. Nathanson’s film when I was finally able to see the 2019 movie “Unplanned” that, like “The Silent Scream”, also caused tremendous controversy. Some theaters refused to show it and many film critics panned it but the movie was a surprising success at the box office.

“Unplanned” is a great sequel to “The Silent Scream” because it depicts the true story of Abby Johnson, an ambitious young woman who became the director of an abortion clinic and thought she was helping women.

Abby slowly and painfully finally learns the truth about both medical and surgical abortions and the real effects on women-including herself. The effect is both eye-opening and heartbreaking. Abby Johnson now helps other abortion clinic workers like herself as well as the public to see the truth about the enormous damage abortion causes.

Although “Unplanned” is no longer in theaters, it is available for purchase or online streaming on TV and well worth seeing and sharing with others.

Thank you, Abby Johnson and Dr. Nathanson, for your courage in sharing your stories. We will never know how many born and unborn lives you have saved!